We Can Engage With Grace?

Our kids teach us a lot about life. Doesn’t matter if they’re in-utero, a newborn, a toddler, or a teen. An obvious statement of course, but not only do our children teach us about their journey, they teach us about our own. Today it happened again, O taught me something. He reminded me about self. He reminded me about our need to be who we say we are and our need to perform at our best. When we don’t, it can unravel us.

It is our own disappointment in self that stings the most. I thought about this while reading Dr Atul Gawande’s recent New Yorker piece entitled Personal Best. To me, Dr Gawande’s courageous act of getting an expert coach exceeds his desire to better himself as a surgeon and beat the national averages on complications. He wants to stay true to himself; he wants ongoing improvement and escalating precision. He doesn’t want to let himself down. If we let others down, it feels absolutely terrible. When we let ourselves down by acting against our integrity or mission, it can feel far worse. Visceral. Two things converged on me today:

One, being a parent is terrifying. Terrifying in all the ways we worry about our children, from their health to their capacity to their future. But also terrifying in the unspeakable ways. In the ways we don’t say out loud because they are simply too frightening. For example, I go through phases (on take-off on the tarmac or in the dark of night) where I spend a good deal of time thinking about how my kids will do after the day I die. I worry about dying for me, but more I worry about dying for them. Yes, I hone in on what I’ll miss and how much I want to be there, but also I think about what dying would look like to them. What it will sound like. What it will smell like. I wonder, what they would do without my singing? How will they really know how much I love them? I feel incredibly desperate when I get to that spot.

Something immutable in me is the need to ensure my children know about this ungoverned, uncontrollable, unconditional love. I want them to know this now but also in the future. Will they have enough of me in their lives to remember this love after I die? O is just about to turn 3 years old. Together, we’re intertwined, connected, co-dependent, and madly in love. But he’s not even three. If tomorrow the bus runs me over, will he remember me? How will he know forever the absolute overwhelm I have for him. Tell me, how will he know?

I’ve written the boys letters. Sometimes it helps me feel at ease. Yet somehow today, those don’t even seem to fill the bowl.

This is where I let myself down. I don’t even know how I want to die. I haven’t told those that love me what I wish for in dying. And I really should. But wait,

O woke up this AM with a wet bed, wet jammies, and wet new undies. The night before, he’d stayed dry and he had demonstrated immeasurable pride when he arose from his dry bed. When it dawned on him this morning that he didn’t do what he had hoped, he went ballistic and became overrun with anger. The anger was directed entirely at himself. At one point he simply opened his jaw and screamed. I’d never seen him become so overwhelming disappointing. In himself. A major mega-tantrum ensued. Our morning went completely off the rails. And so all this served as a very solid reminder: It really is difficult living up to our own expectations, isn’t it?

Two, I don’t have a living will. And I need one. I’ve been thinking this for about 10 years. The inconvenience of finding a lawyer, the inconvenience of having an open discussion about death, and the inconvenience of thinking about this straight on have all stood in my way. I need my family to really know how I feel about dying and what I wish for. As Alexandra Drane reminds us, and as Atul Gawande has succulently written: You only die once. We should die really well. Part of doing it well will help me care for my children. Will help me find peace. This all came together today.
So it was O who reminded me so robustly this morning, I don’t want to mess this dying thing up. Survival is key, but dying well is important, too. Doing this well will serve my family, too.

Watch this 10-minute video about the Engage With Grace movement. Find out the 5 questions you can ask of yourself, and ask your loved ones now. You don’t have to wait to make a living will. Hear a powerful story about a mom, her loving family, their defiance of the health system, and learn about the beautiful, final moment she shared with her daughter that inspired a movement. Precious, beautiful, inspiring.

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7 Comments to “We Can Engage With Grace?”

“How will he know forever the absolute overwhelm I have for him. Tell me, how will he know?”

I sincerely hope you don’t get run over by a bus anytime soon (funny how that is always the example we all give despite its relative rarity :-)), but if you do…. he will know because he has spent 3+ years (including his time in your belly) being loved and nurtured and cared for by you. It is permanently imprinted deep in his very being. And he will know because all of the people who love you both so much would tell him so, just as Za’s daughter wants to hear over and over again the story of how she was the last one her mom saw before dying. It doesn’t make it any less scary, but he would know.

And on a much less heavy note, at our house when anyone would wake up wet in the night, we’d just laugh about the “pee fairy” paying a visit. Lightens up the whole situation, rather than it feeling so much like a personal failure.

I’m so grateful to Dr Atul Gawande for writing Letting Go. Thank you for talking about this topic on your otherwise cheerful pediatric blog. I know that this information will reach someone who is looking for guidance and doesn’t know where to start. Last year I found Dr Atul Gawande’s article on day 4 of a week of sleepless nights. What a shame that it was a New Yorker article that confirmed my anxiety and suspicion that the therapies and interventions doctors prescribed for my sister were in vain. As long as there was something, anything, to try, they didn’t want to give up. Perseverance is an excellent character trait but it adds many, many layers of complexity to the question of dying at home that isn’t captured on the 0-5 scale on the first question on that slide. We value “fighting till the end” as a society, even if the “fight” entails even more pain and suffering for that infinitesimally small chance at survival. From what I’ve seen, many of the people who die at home did much of their dying receiving Hail Mary interventions first. Very few – actually, only two – had a doctor who recommended they go home instead of try a last ditched treatment.

I’ve pondered your question the last few days. I agree with everything DVS said. My perspective is that it’s more important that you loved him intensely than how or if he consciously remembers. Your contribution is undeniable in his genetics and the fabric of his psyche. It’s difficult to imagine your child forgetting you. But that’s present-day, living self talking. In the future that doesn’t include you, you won’t feel hurt or forgotten. Children are naturally resilient and also naturally forget the majority of their childhood. What they take away is a brain that has been conditioned with positive emotions and experiences, that ultimately makes them feel loved and safe and like they belong. All I want for my kids is to minimize the void created by my absence. I would want my kids godparents and family to play a more active role in helping my husband raise them. I’d want my husband to remarry because having them grow up without a mom at all seems as bad as my dying.

Engage with Grace is a wonderful way to help move the conversation forward. My husband and I went through this process for what seemed like forever – so many hard decisions (that caused me far too many sleepless nights filled with images and worries about loss and life). We recently finished as much as we are going to do for now, and it feels great to both have a sense of how to answer these questions for yourself and how to communicate them to someone you love. And it has started me on a path of having these conversations with the rest of my family. I am thrilled to have Engage with Grace as a support to help in this process. Thanks!

[…] own discomfort with it, but jumped into discussion all the same. One of the folks involved shared a blog from Seattle Mama Doc, who dreads leaving her children when she dies, and knows the best thing is to “plan” her […]

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Seattle Children’s provides healthcare for the special needs of children regardless of race, color, creed, national origin, religion, sex (gender), sexual orientation or disability. Financial assistance for medically necessary services is based on family income and hospital resources and is provided to children under age 21 whose primary residence is in Washington, Alaska, Montana or Idaho.